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Outdated perceptions about people with disabilities are affecting women’s access to cervical screenings.

Dimensions, an organisation that supports people with autism and learning disabilities, has published a new report highlighting the abysmal rates of cervical screenings for women with learning difficulties.

The #MyGPandMe report found that only 19% of women with learning disabilities have had a recent cervical screening, compared to 73% of the general population.

A cervical screening test – also known as a smear test – is used to detect abnormal cells on the cervix. Checking the health of the cervix and removing abnormal cells helps to prevent cervical cancer.

Around 3,000 women in the UK are diagnosed with cervical cancer every year. Cervical cancer can affect women of all ages, but it’s most likely to develop in sexually active women between the ages of 30 and 45.

Cervical screenings are a legal right, and must be accessible for all patients who need them. Reduced access for women with learning disabilities puts their lives at risk.

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Health inequality is still present in Britain. Women with learning disabilities live on average 29 years fewer than their counterparts in the general population. Men with learning disabilities are likely live 23 years fewer.

This mortality gap is a clear indicator that people with learning difficulties are not able to access the same level of healthcare as the rest of the population. Learning disabilities mean that you are more likely to experience poor health and a reduced quality of life.

People with learning difficulties may need reasonable adjustments to be made so they can access vital care. (Picture: Getty Images)

Illnesses may be going untreated in people with learning disabilities due to multiple factors including difficulties in communication, a lack of appropriate training for GPs and ignorance around or an unwillingness to offer reasonable adjustments for patients who need them.

Reasonable adjustments are small changes that health professionals can make in order to give patients with different needs a better chance of being able to engage with services. They are often simple and cost-free, but make a huge difference to the people who need them.

People with autism or learning disabilities also feel 30% less likely to be listened to by their GP.

With two thirds of GPs receiving less than a single day’s training on how to meet the needs of patients with autism and learning disabilities, it’s clear that medical professionals are not adequately prepared to support and treat people with different requirements.

Amy Dissanayake, a GP in West Sussex, told Metro.co.uk: ‘These figures are really disappointing but not a great surprise. Sadly, we know there is a huge health inequality for people with learning disabilities so diseases are being diagnosed later and people are dying earlier.

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‘One area which is likely to be a cause of this is that fewer people with a learning disability have their health screening, such as cervical screening.

‘There are many reasons why there is reduced uptake of tests generally – such as communication difficulties, lack of time, difficulty in organisation with carers to attend appointments, thinking they don’t apply to people with learning disabilities or it’s too complicated to arrange tests, especially for those people with challenging behaviour.

‘Cervical screening or smear tests are quite an invasive procedure. Historically, medical professionals, family and carers may have wrongly assumed that people with learning disabilities weren’t sexually active and so wouldn’t need a smear.

‘However, we advise that all women should have their screening tests.’

64% of GPs have received less than a day of training on how to meet the needs of patients with learning difficulties. (Picture: Getty Images)

Amy believes that as a GP, she should make reasonable adjustments for her patients with learning disabilities so they can access healthcare in the same way as everyone else.

‘These reasonable adjustments can be allowing flexible appointment times or longer appointments, using easy read (mainly pictorial) information and ensuring all staff know how best to communicate with each patient by adding this to their notes.

‘We need to help all staff in general practice become familiar with reasonable adjustments and more training is an excellent way of doing this. It’s also vital that we support families and carers to make sure that patients can attend their appointments and that somebody who knows them well joins them.’

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Dimensions currently supports 53 year old Louise, who has a mild learning disability. She had never previously had a smear test.

Louise grew up in an institution where she suffered sexual abuse, and because of her experiences, it takes a long time for her to trust people or have conversations about more intimate matters.

Dimensions spent months preparing Louise for her very first cervical screening test. She needed to understand the process and the instruments that would be used, and she also needed to choose the nurse who would perform it in order for her to feel safe.

When the day of Louise’s smear test came, it took three tries to complete the procedure. The first two attempts saw her withdraw in panic. Those around Louise didn’t put any pressure on her to try again, but simply waited until she said she was ready to have another go.

In the end, Louise’s support team pinned a picture of David Beckham to the ceiling so she could focus on her favourite celeb as a distraction tool.

Kerry, a member of Louise’s support team, said: ‘Louise had full choice and control over the process, and the timescale. We worked with the excellent surgery staff at a pace and in a way that was comfortable for her. I’m really proud, both of Louise for her courage and of her support team for the quality support we delivered.’

Dave Robinson, the Health and Wellbeing Programme Manager at Dimensions, says that he is not surprised that rates of cervical screenings are so low among women with learning disabilities.

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‘Outdated cultural perceptions and expectations for people with learning disabilities are still evident within the general population. These permeate into GP practices and can drastically reduce access to screenings.

‘For example, there is an assumption within our society that women with learning disabilities aren’t sexually active. Whilst this is absolutely not the case, it is also recommended that women should have the screening if they are sexually active or not.

‘Sometimes, often out of a well-meaning sense of over protection, it can be presumed that women with learning disabilities shouldn’t or can’t have procedures that are deemed “intimate” or “invasive”.

‘Whilst it is true that some women may need help and support in deciding what is in their own best interest, it is also the case that women with learning disabilities are at exposed to the same kind of risks as other women and have a right to be kept as safe as possible.’

When asked how he would tackle the current inequality in service access that affects people with learning disabilities, Dave said that medical professionals need more training and more awareness of their responsibilities as set out by the Equality Act.

He said: ‘Part of the answer lies in engaging with GPs and other primary healthcare staff so they know that everyone with a learning disability has the right to screening services, and that they have a legal responsibility under the Equality Act to make the necessary reasonable adjustments that will make healthcare services more accessible to people with learning disabilities.

‘The process can be complicated, but we need to give GPs and their teams enough time and training to enable them to confidently communicate with women with learning disabilities, their families and supporters about how best to ensure that they have fair access to services that are right for them.

‘There are some excellent resources available to inform and support women with learning disabilities to understand procedures such as cervical screening and to help them make decisions about their care.

‘Where a woman is not able to make this choice for herself, then there is a clear process laid out within the Mental Capacity Act that will help those around her to arrive at the decision that is right for her and is in her absolute best interest.’

Dimensons also works with Betty, another women with a mild learning disability who needs support for a couple of hours each week. Betty wants to have a cervical screening, but sadly hasn’t been able to complete the procedure.

Each attempt results in her freezing in terror. An unsympathetic nurse in the past is believed to be at the root of her fear.

Betty’s support team has tried to normalise the procedure for Betty by introducing the instruments that will be used, providing easy to read documents so Betty can understand what will happen, allowing extra time for the appointment, having a trusted support team member holding Betty’s hand and instructing medical staff to take a calm, gentle approach.

Dimensions will keep trying so that Betty can have her cervical screening test.

A lack of access to cervical screenings is threatening the quality of life and longevity of patients with learning disabilities in Britain. This must change.

You can find more information about Dimensions and the work they do here.